thanks for asking. i'm managing?
by anne maxwell

One hard thing about having a chronic illness such as fibromyalgia is dealing with all the unsolicited advice you receive from well-meaning family members and friends.

Often the advice is either expensive or unreasonable, and some of the family members or friends may even seem to hold you responsible for your illness, if you do not take their advice. I have discovered that when someone asks how I am doing with my fibromyalgia, it helps to be able to say, “Thank you for asking. I’ve discovered I can manage the symptoms just like people manage diabetes or heart disease.” After a lot of work, I am indeed, learning to manage the symptoms.

I first heard of fibromyalgia when my doctor told me I had it. I breathed a sigh of relief because the lab tests had ruled out lupus and multiple sclerosis. If I had known at that time how much it would change my life, I would not have been so relieved.

My symptoms included and continue to include chronic pain ranging from headaches to pain in my shoulders, back, rib cage, hips, legs, ankles, and feet. I often awake in the morning feeling like I have been beaten. In the beginning, I could get so little refreshing sleep that I experienced symptoms of sleep deprivation. I felt that my mind was outside my body observing my shaky behavior, and I cried at the slightest word or look or at nothing. I felt exhausted from the time I got up until the time I went to bed at night. It was not a sleepy feeling. It was a tiredness that went deep into my bones; I felt like I could not push myself to do one more thing. This often occurred as soon as I awoke in the morning. The exhaustion did not let me sleep any better. It just followed me around like a persistent new character in my life.

A New Course of Study
Once when I complained to my doctor about all the things I could no longer do, she said, “You’ve been in school all your life.” (I was a college professor and had, indeed, spent my lifetime in school, either as a student or as a teacher and researcher.) “Just look at this illness as another course of study,” she advised. “All right,” I thought. “I’ll try to learn whatever lessons I need to learn here. Then maybe I’ll get my life back.”I educated myself about the illness and what we know about how it works. My doctors and I tried numerous medications, which seemed to work for a while and then lose their effectiveness. I tried massage and acupuncture. They worked for several hours after the treatment but not long enough to justify the costs.

I looked into meditation and Buddhism. I was especially drawn to the idea that one can be in pain, but how you think about that pain determines whether you suffer. If you tell yourself awful stories about the pain—that it is going to last forever, that it is insupportable, that it has ruined your entire life, etc.—then you suffer in addition to hurting. I discovered that one can have pain without suffering by simply noting the pain in the moment, but not making up depressing stories about it.

I was fortunate to have a friend who kept reminding me that the illness was real and that I had to deal with that reality and not lament what I had lost in my life. I realized that the exhaustion and pain were probably not going away in the near future, but even if they did go away, my body was telling me I had to live a different life.

Observing My Body and Managing the Symptoms
Eventually, it occurred to me that I should think about managing the symptoms. I started watching and listening carefully to my body. I started doing what my body was telling me was best for it, even when my mind told me I wanted to do something else. I realized that I had been fortunate for much of my life because I had always been able to depend on my body to do what I wanted it to do, but things were different now.The hardest thing for me was learning that the illness causes me to hit a low point at about 2:00 p.m. every day when I am unable to continue standing, sitting, or engaging in normal activity. I become weak and have difficulty concentrating. I am unable to do anything more, unless I rest and sleep. This low point lasts from 2:00 to about 6:30 or 7:00 p.m.

I also discovered I could no longer push myself to work 12 to 14 hours a day. In fact I had to quit working. Finally, I realized I could no longer be the active and energetic person I had enjoyed being all my life since the exhaustion persists.
Rather than berate myself about these losses, I am trying to let them go graciously to avoid turning the reality of my life into unnecessary suffering.

I experimented to find the right amount and pattern of daily exercise for my body to make my muscles feel strong and limber. I walk every morning and do stretching exercises throughout the day. When I get the chance, I swim. I find that when I don’t do my exercises, I feel worse, and when I overdo them, I feel worse.

My husband and I revised the way we share the household tasks. He now does the heavy work, both in the house and in the garden and I do the light work. I must limit even these activities to short periods of time and intersperse them with sitting and lying down to keep my muscles from becoming stiff and painful. Without my husband’s support, little of this rescheduling would have been possible.

I finally found a doctor who was willing to work with me to try to manage the pain and the disturbed sleep symptoms. She also worked with me to try various medications, which affect brain chemistry. (Much of the current research suggests that the symptoms may be caused by problems in the neurological system.) Consequently, we finally found a medicine that allows me to obtain refreshing sleep most nights.

Forced to Confront My Demons
The illness forced me to change some of my unhealthy ways of thinking. I had always defined myself by my work and thus did excessive amounts of it. I had always worried about money, believing that there would never be enough. I was a “friendly helper” with everyone I met, always responding to other people’s problems and illnesses with concern.

While I spent much of my life making sacrifices to improve other people’s lives, I did little to care for myself or improve the quality of my own life. I would spend long hours with students and colleagues helping them on their projects. I counseled
them not to work when they felt ill. But I never took my own advice. I have become a little easier on myself and have learned to avoid people who take too much of my energy.

As the illness progressed I could no longer define myself as a college professor, and “retired college professor” did not feel like an adequate characterization of who I am. I had to find other interests and skills and think of new ways to define myself. I had to grapple with the question of whether what we do for income should define who we are.

Getting a Life Back
The life I got back is a very different life from the one I lived before. I rest frequently throughout the day and every afternoon. If I choose to get off my rest schedule, I know the result may be even more pain and more exhaustion than usual the next few days. I write different things. Before I wrote letters of recommendation and memos; now I write about my past travels and cooking. I read more fiction and take time to cook nutritious meals.

I have much less time and energy to accomplish what I set out to do in a day. Consequently I consider what I do with my time more carefully than I ever did before. I used to fill up my day with activities I did not consider very carefully nor value very highly. I acted as if I had all the time and energy in the world. This illness reminds me daily of the finite time I actually have on this earth. I let the housework go frequently because it is not as important to me as my writing, reading, or gardening.

Now when people ask me how my health is, I don’t complain about my exhaustion and pain, even when the symptoms are affecting me at that moment. I mean it when I say, “I am managing the symptoms.” I get less unsolicited advice this way, and I am honest. I am learning to manage this chronic illness.

Anne Maxwell lives in Burnsville where she watches the mountains, trees, and clouds, writes, reads, and gardens. She had to retire as a college professor and is waiting to see what the next phase of her life brings.

[ annemaxwell_97@hotmail.com ]